does anyone else get muscle weakness go bad in their legs that they fall?

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daniJav
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Date Joined Jan 2010
Total Posts : 82
   Posted 1/4/2010 10:00 AM (GMT -7)   
It is in my joints and muscle and it hurts so bad almost like my leg is asleep, but when i stand like to stand in line somehwere, or cook or anything my legs gives out and I fall. Does this happen to anyone else?

aimsgirl16
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Date Joined Jun 2008
Total Posts : 1469
   Posted 1/4/2010 10:07 AM (GMT -7)   
Hey DaniJav. Welcome to HW. I have had this happen before but it only happened the first time I was put on high doses of prednisone. and it stuck around until my doese was lowered. Are you on pred? If so, whats the dosage? Also, what other meds are you taking??

daniJav
Regular Member


Date Joined Jan 2010
Total Posts : 82
   Posted 1/4/2010 10:12 AM (GMT -7)   
no im on something else, Plaquenil. I have been on it for 2 months now. I think it is making the lupus worse because i only had issues with fatigue but since i have been taking this it has gotten worse!

MJLD
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Date Joined Jul 2007
Total Posts : 1048
   Posted 1/4/2010 6:06 PM (GMT -7)   
It may be that you need other meds in conjunction with the Plaquenil. Many of us are on a combination of meds, which can take trial and error to figure out what's right for you. Plaquenil takes a while to get in there and start helping, but it's def. not one of the more aggressive treatments.

Make sure you report your symptoms and keep at it until, together with your doc, you figure out the best, most effective treatment for you. Judy

daniJav
Regular Member


Date Joined Jan 2010
Total Posts : 82
   Posted 1/4/2010 6:46 PM (GMT -7)   
i went and saw my roummy today and she gave my steroids and ran some blood work to see what is going on with my muscles. im taking nuva ring, but i dont think the combo of that with the plaquinl would cause that. i just cant wait for this pain to go away!!! i have a 18 month old going threw her terrible 2's so it needs to go away asap!!!!!!!!

Bsime
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Date Joined Apr 2006
Total Posts : 1299
   Posted 1/4/2010 10:49 PM (GMT -7)   
Danni,
 
Is your doctor testing your cpk or sed rate?  Muscle weakness is common with myositis diseases which often accompany lupus.  I have mixed connective tissue disease which is lupus, scleroderma and polymyositis.  Lupus can also produce the type of symptoms you are experiencing.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


daniJav
Regular Member


Date Joined Jan 2010
Total Posts : 82
   Posted 1/5/2010 10:01 AM (GMT -7)   
im not sure, my memory is so bad :(, I hope that it is the lupus causing the pain. I believe im having a flair up so that may be it. Im prayin that is all, i dont wana have to add more to my charts, i am only 22 haha it look so bad when most people double my age dont have half the issues i do lol.

Bsime
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Date Joined Apr 2006
Total Posts : 1299
   Posted 1/5/2010 1:16 PM (GMT -7)   
Dani,
 
Auto immune diseases have nothing to do with age.  I am almost 70 but was very fit when I got sick 5 years ago and wound up a quadriplegic.  These diseases can hit anyone at any age. 
 
It is more difficult for a young person and I think it was easier for me to cope with the possibility of being disabled and coping with an incurable disease than for some your age.
 
See your doctor about your new symptoms and focus on getting your immune system under control. Once that is done (which is not always easy) then you can put your life back together again.  At your age with early diagnosis and aggressive treatment you should be able to resume a normal life.  And if not, redifine your normal and make the best of it.  There is much to be optimistic about new treatments and cures.
 
Hang in there and forget the age thing.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 1/5/2010 1:30 PM (GMT -7)   
Hey girl! I completly underderstand where you are coming from. I am also 22, diagnosed 3 years ago. It has been very hard but you have your ups and downs. No matter how hard things get never give up!!! and try to stick around HW. The members on this forum are very close and very encouraging and are so helpful in times that you need support and encouragment. I look forward to getting to know you better and feel free to email me if you would like to talk! You can find my email by clicking on my name in blueon the left side of this post...

daniJav
Regular Member


Date Joined Jan 2010
Total Posts : 82
   Posted 1/5/2010 3:40 PM (GMT -7)   
thank you very much. It is little things that get me, like not being able to run with my daughter in the park and stuff. My husband and I are seperated because he just kept telling me that i use lupus as a excuse for things and that it is not that bad. Then my parents tell me to suck it up and carry on with my life. I do not have much support from my family so it makes me feel alot better knowing that I can get it on here.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 1/5/2010 3:56 PM (GMT -7)   
Something that you might want to read if you havent is the Spoon theory! Here is a link to website.... http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

It would also be good to let your family read it, I know it has helped my family and many other families understand a little more about what you are going through!!

Artickat
Regular Member


Date Joined Dec 2009
Total Posts : 26
   Posted 1/5/2010 6:01 PM (GMT -7)   
I agree...the Spoon Theory was also recommended to me and it is wonderful...it is hard being young and having no one understand you...I have had my entire family read this and could tell by the look on their face something was "clicking". I wish you the best of luck!! This is a wonderful forum...

daniJav
Regular Member


Date Joined Jan 2010
Total Posts : 82
   Posted 1/5/2010 10:19 PM (GMT -7)   
thank you so much for that link. I plan on sending it to everyone and I hope that they can understand.

joannebas
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/5/2010 11:56 PM (GMT -7)   
Hi all. This is my first time on this forum. I was diagnosed with SLE and other related illnesses about two years ago and have in the last six months had to give up work until I get back in remission. It has been a lving nightmare and at times I just cant see the light. In answer to this feed I take the steriods and Plaquenil talked about with loads fo other tablets and have found that I fell quite a lot when my medication was adjusted. My legs would give way or I would just go numb or tingly. I havent fallen for a few weeks now but seem to have the meds under control. I just wish I could do normal things not be in pain and hadnt swollen up like a moon! People out there who have seen improvement and hope please shout!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/6/2010 10:47 AM (GMT -7)   
I've seen lots of improvement in the course of my lupus -- sometimes it gets worse before it gets better. (Dx 2002)

My extreme fatigue (sleep 18hrs, still feel tired) is gone. The times when I had inflammation almost every day is gone -- would go from top of foot to other muscle groups - swollen painful tight & hot to the touch. The almost constant neuropathy in hands & feet is rare now. The lupus headaches (hide from sounds, lights, etc) are rare. The extreme cognitive dysfunction is much much improved. (At one point they told me i"d lost 20 IQ points! lol) Joint & muscle pain still travels around, but at a lessor degree than before.

I've been on plaquenil, prednisone, and prixicam since the beginning. Sleep aids helped the fatigue (go figure). Imuran didn't do much for me, but Cellcept seemed to turn everything around. Having proper treatment for illness-induced depression is also important.

I've been lucky not to have kidney or liver involvement - do have a somewhat mild case of Sjogren's, controllable OTC. The cognitive dysfunction is/was the worst. I had to close a thriving business in high-tech, and can't yet go back to it. My brain is somedays mostly normal - somedays if I'm not careful about sleep and/or food it isn't worth a darn. My formerly impeccable sense of direction & map reading skills seem to be permanently missing.

There IS improvement & hope!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 1/7/2010 5:24 AM (GMT -7)   
I def know what you are going through! I am 22 myself & have a 2 yr old son. I am also in school fulltime to be a nurse. I was diagnosed back in sept after bad symptoms for a yr or so. I have actually had symptoms since I was 7! Since being on Naprosyn, Plaquenil & Neurontin, things have actually gotten worse. I have a rheumy appt today and have to talk to my dr about this. They decided to wait 6 months with the Plaquenil to see if it works before trying anything else. I believe I have CNS involvement but all my tests for things keep showing up negative,(2 nerve/emg studies, a
skin biopsy for neuropathy, eeg for seizures...which i had 2 seizures at age 15 with no known cause..among other things) I am going to push the issue of other meds to treat my disease instead of
my pain because all they do is make me less able to concentrate, etc. I have tried higher Neurontin
doses, Cymbalta and other meds for other things/symptoms which have not agreed with me and made me more out there. I hope you can find a good treatment plan for you and feel better! *hugs*
Feel free to pm me anytime you need to talk, I would love getting to know someone my age with similar experiences/life challenges. Take care :)
 
 
*Lupie Britt*
 
-SLE- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Flonase Nasal Spray- twice daily; Dexamethasone Nasal Spray- 3 wk intervals; vitamin- once daily; Prilosec- 20mg twice daily; Neurontin- 600mg twice daily; Cymbalta-60mg daily; Dexamethasone suspension for ulcers;  excedrin migraine- as needed.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/9/2010 9:26 AM (GMT -7)   

Hi hun, I'm sorry you are having such a hard time. I have muscle weakness off and on. It hasn't been as bad lately but it seemed like the mornings were the absolute worst. I felt like I was draging concrete around with me. I think the plaquenil starterd making a differece in about 6 months. I was kind of strange. I suddenly noticed that things wern't giving me as many problems as they had before. I do have different problems but the legs did improve with time.

I hope they find something to help you soon.

carol



systemic sclerosis sine scleroderma,sleep apnea,Megaloblastic anemia
what ever that is.
 
 


daniJav
Regular Member


Date Joined Jan 2010
Total Posts : 82
   Posted 1/9/2010 2:30 PM (GMT -7)   
i think the meds started to work because i noticed i was starting to feel better, but a few days after that i called in my refill and the pharmacy close for the holidays! the one day they were open we had a blizzard and got snowed in. The stress from the blizzard and being stuck in the house prob caused my flare, im so clastrofobic and i was trippin being stuck in the house for days. Then my flare got so bad i had to go to the er!

wow that must be real hard going to school full time. I am so grateful i dont have things as bad as other people. I can tan and stuff the only effect the sun has on me is my eyes. I always have to wear sunglasses but it isnt that bad. I am going to college online because it seems to be much easier with the lupus, but im gona switch to a community college because the distant learning just isnt for me.

daniJav
Regular Member


Date Joined Jan 2010
Total Posts : 82
   Posted 1/9/2010 11:17 PM (GMT -7)   
I was given steroids to help this flare go undercontrol, i have only been on them for 2 days but i have not seem much improvment. im on them for 20 days. I have been trying to stretch to help my muscles but my feet tingle, i dont know if it is a good thing or a bad thing haha. What else can cause this kind of muscle pain other then a lupus flare?

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 1/12/2010 1:59 AM (GMT -7)   
i had this happen when my steroids were very high..hope it resolves soon.
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


daniJav
Regular Member


Date Joined Jan 2010
Total Posts : 82
   Posted 1/12/2010 9:09 AM (GMT -7)   
darn i kinda hope that it is the steroids but at the same time im miserable and i can not imagine 20 more days of this!! It is so painful sometimes and I cant really get much done because the pain is so bad.
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